This article was downloaded by: [University North Carolina - Chapel Hill] On: 25 November 2014, At: 11:34 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK
AIDS Care: Psychological and Sociomedical Aspects of AIDS/HIV Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/caic20
The Edinburgh cohort of HIV positive drug users: Who are they and who cares for them? a
a
a
A. Chiswick , V. Egan , R. P. Brettle & G. M. Goodwin a
b
Regional Infectious Diseases Unit, City Hospital , Greenbank Drive
b
MRC Brain Metabolism Unit, Royal Edinburgh Hospital , Morningside Park, Edinburgh, EH10 5HF, UK Published online: 25 Sep 2007.
To cite this article: A. Chiswick , V. Egan , R. P. Brettle & G. M. Goodwin (1992) The Edinburgh cohort of HIV positive drug users: Who are they and who cares for them?, AIDS Care: Psychological and Sociomedical Aspects of AIDS/HIV, 4:4, 421-424, DOI: 10.1080/09540129208253113 To link to this article: http://dx.doi.org/10.1080/09540129208253113
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/termsand-conditions
AIDS CARE,VOL. 4, NO. 4, 1992
421
IN PRACTICE
The Edinburgh cohort of HIV positive drug users: who are they and who cares for them?
Downloaded by [University North Carolina - Chapel Hill] at 11:34 25 November 2014
A. CHIS WICK^, V. EGAN',R. I? BRETTLE' & G. M. GOOD WIN^ 'Regional Infectious Diseases Unit, City Hospital, Greenbank Drive; and 2MRC Brain Metabolism Unit, Royal Edinburgh Hospital, Morningside Park, Edinburgh EH10 SHF, UK
Abstract Between 1983 and 1984, it is estimated that over 1,000 injection drug users in Edinburgh were infected with HIV. The social and demographic characteristics of 300 HIV positive drug users attending a medical clinical between 1987 and 1991 have been recorded. Nearly all were unemplayed, poorly educated and living in council-owned accommodation; one third were female, 17% of whom were caring for a child. Half the cohort lived with a partner, and one @j?h with parents; there were no dtflerences between symptomatic and asymptomatic patients. During the study, 45 patients died, mostly from AIDS or an AIDSrelated condition. HIV positive drug users are not socially isolated, but they are heavily dependent on family support in the community. Introduction Edinburgh has one of the highest rates of HIV infection amongst the adult population and probably the highest amongst drug users in the United Kingdom. It is now estimated that between 1,000 and 1,500 injection drug users were infected in the city of Edinburgh between the summers of 1983 and 1984 (Robertson et al., 1986). Over 400 of them now attend a single clinic, which provides both HIV counselling and testing and also medical care (Brettle, 1990). These features of the clinical service offered to HIV positive drug users in Edinburgh have greatly facilitated access to a group who have the reputation of being difficult to engage for clinical purposes and particularly for research (HMSO, 1991). Accordingly, we are in a position to summarize the personal and social circumstances of a large group of HIV positive drug users, some eight years into the epidemic of HIV infection that has occurred here. The present report will document, in particular, where they live, with whom, and whether there is a discernible impact of worsening HIV disease upon the support of their friends, partners and parents. Methods
The present study was approved by the appropriate local Ethics Committee. Between September, 1987 and December, 1991, 300 HIV positive subjects who had acquired their
Address for correspondence: Guy M. Goodwin, MRC Brain Metabolism Unit, Royal Edinburgh Hospital, Morningside Park, Edinburgh EHlO 5HF, UK.
Downloaded by [University North Carolina - Chapel Hill] at 11:34 25 November 2014
422
A. CHISWICK E T A .
infection through intravenous drug use, were voluntarily recruited to the study. They were consecutive attenders at the out-patient clinic, or patients in the wards of the Infectious Diseases Unit of the City Hospital, Edinburgh. Only four patients have consistently declined to participate in the study. Median time between first ever clinic attendance and recruitment into the study was 15.2 months (inter-quartile range=2.7 months-27.2 months). Thirty patients (10%) were seen at first attendance. Data were collected relating to age, marital status, current partner, years in education and nature of living accommodation. Data were obtained by means of a semi-structured interview, coded and analysed using SSPS V4.0 for the Apple Macintosh. Centres for Disease Control (CDC) (1986) staging information for each patient was obtained from the medical notes. Differences between asymptomatic and symptomatic patients and the effect of gender on living circumstances were examined using chi-square. Results
Two hundred and two men and 98 women (ratio male:female=2:1) were interviewed. The mean age (s.d.) of the cohort was 29.1 (5.6) years. Marital and living circumstances
One hundred and eighty-three (61%) of patients were single, 49 (16%) were married, and 7 (2%) were widowed. Sixty-one (20%) were either divorced or separated from their partners. Of those not in prison, only 51 (19%) lived alone. One hundred and forty-six (54%) lived with either a spouse or a partner and 50 (19%) lived at home with parents. Twenty-three lived with one or more children. Most of these, as might be expected, were women (16.5% of female patients). It was much more common for male patients to live at home with parents that it was for females (~*(3)=25.22, pt0.001). Figure 1 shows the differential proportions; there were no differences in the proportion of men and women living alone, or with a partner. Percentage of subjects 0
10
20
30
40
50
60
70
80
90 100
1 With children With parents With partner
Alone
FIG. 1. Percentage (vertical bar gives 9S% confidence internal) of the non-imprisoned HIV-positive subjects divided by who they live with (U, females; H, males).
THE EDINBURGH COHORT 423
Downloaded by [University North Carolina - Chapel Hill] at 11:34 25 November 2014
Accommodation One hundred and sixty-five (55%) of the group lived in council accommodation. The Standing Conference on Drug Abuse (SCODA) report (Haw & Liddell, 1988) identified an X-shaped distribution of problem drug takers in the city. Our group is concentrated in the four corners of the X. There are, respectively 39, 36,30 and 23 people living in each arm of the cross, which comprises 43% of the total. These concentrations correspond to the location of four large housing estates generally regarded as foci of poverty and deprivation. Twenty-one (7%) were owner-occupiers, 22 (7%) lived in bed-sits or rented rooms, and 18 (6%) in supported accommodation. Twenty-eight (10%) were in prison at the time they were seen, and one person was in a drug rehabilitation centre. There were no significant differences between asymptomatic and symptomatic patients as far as their living circumstances were concerned; the figures for asymptomatic and symptomatic groups respectively were council housing 55% and 55%, single room 28% and 29%, owner occupation 7% and 6% and prison 10% and 10%.
Education and occupation As a group, the subjects were poorly educated. Ninety-three per cent had had less than 11 years of formal education. Truanting from secondary school was commonly reported. Information is not available on numbers of children who play truant from the secondary schools which serve the large estates from which our cohort was drawn (Lothian Regional Education Department, personal communication), so we do not know whether our subjects were typical of their peers in this respect. However, four had a degree, 21 (7%) had completed a City & Guilds Diploma, 14 (5%) had completed an apprenticeship. At the time of interview, all but five were unemployed. Those in employment were, respectively, carpet-fitters (2), motor mechanics (2), and a road manager with a rock group.
Deaths During the course of the study, there were 45 deaths from the following causes: AIDS (23), AIDS-related conditions ( 11), suicide (2), accidental overdose ( 6 ) , complications following an injection into the femoral artery (2), head injury (1). Eighteen died in the City Hospital, five in a hospice for people with AIDS or HIV infection, two in the Royal Infirmary of Edinburgh, and the remainder at home. Discussion We have been able to take advantage of a unique opportunity to study a large group of drug users with HIV infection. They were necessarily selected for their willingness to attend a clinic offering health care and some maintenance prescribing of methadone. This study provides some insight into their domestic circumstances. They are almost all unemployed, poorly educated, and reside predominantly in council-owned accommodation. About one third are women. Socially, they are quite stable. Most have a partner and 19% live with parents. Cross-sectional comparison suggests that progression to symptomatic disease has not led to greater social isolation. The findings emphasise the dependency of the patients upon the financial or welfare provisions of the state. Thus, almost all of them were unemployed and about half live in
424
A. CHISWICK ETAL..
Downloaded by [University North Carolina - Chapel Hill] at 11:34 25 November 2014
council accommodation. They are not, however, bereft of social supports, and most of them live with either a partner or, significantly, with parents. A cross-sectional comparison of symptomatic and asymptomatic patients does not suggest that a discernible increase in social isolation has occurred yet, in relation to disease progression. From this point of view, the findings are moderately reassuring but they will require careful up-dating. It is evident from the anecdotal accounts of deprivation in the United States that care is frequently either never available, or is withdrawn from heavily dependent individuals with HIV. The question of who will care for these patients as they become increasingly unwell, will continue to be asked. The answer will continue to be of medical, moral and political significance.
Acknowledgements We thank the doctors and patients of the Infectious Diseases Unit, City Hospital for their co-operation, Norma Brearley for the careful preparation of the manuscript, and the Medical Research Council for project grant support.
References BREI-I-LE, R.P. (1990) Hospital health care for HIV infection with particular reference to injecting drug users, AIDS Care, 2, pp. 171-181. CENTERS FOR DISEASECONTROL(1986) Classification system for human T-lymphocyte virus type III/lymphadenopathy-associated virus infection, Annals of Internal Medicine, 105, pp. 234-237. HAW,S. & LIDDELL,D. (1988) Drug problems in Edinburgh dism’ct, Report of the SCODA Field work study (Standing Committee on Drug Abuse). HMSO (1991) Drug misuse and dependence. Report of a medical working group (HMSO, London). J.F. & BREITLE, ROBERTSON, J.R., BUCKNALL, A.B.V., WELSBY,P.D., ROBERTS,J.J.K., INGLIS, J.M., PEUTHERBR, R.P. (1986) Epidemic of AIDS related virus (HTLV-IIVLAV) infection among intravenous drug abusers, British Medical Journal, 292, pp. 527-529.
AIDS Care: Psychological and Sociomedical Aspects of AIDS/HIV Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/caic20
The Edinburgh cohort of HIV positive drug users: Who are they and who cares for them? a
a
a
A. Chiswick , V. Egan , R. P. Brettle & G. M. Goodwin a
b
Regional Infectious Diseases Unit, City Hospital , Greenbank Drive
b
MRC Brain Metabolism Unit, Royal Edinburgh Hospital , Morningside Park, Edinburgh, EH10 5HF, UK Published online: 25 Sep 2007.
To cite this article: A. Chiswick , V. Egan , R. P. Brettle & G. M. Goodwin (1992) The Edinburgh cohort of HIV positive drug users: Who are they and who cares for them?, AIDS Care: Psychological and Sociomedical Aspects of AIDS/HIV, 4:4, 421-424, DOI: 10.1080/09540129208253113 To link to this article: http://dx.doi.org/10.1080/09540129208253113
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/termsand-conditions
AIDS CARE,VOL. 4, NO. 4, 1992
421
IN PRACTICE
The Edinburgh cohort of HIV positive drug users: who are they and who cares for them?
Downloaded by [University North Carolina - Chapel Hill] at 11:34 25 November 2014
A. CHIS WICK^, V. EGAN',R. I? BRETTLE' & G. M. GOOD WIN^ 'Regional Infectious Diseases Unit, City Hospital, Greenbank Drive; and 2MRC Brain Metabolism Unit, Royal Edinburgh Hospital, Morningside Park, Edinburgh EH10 SHF, UK
Abstract Between 1983 and 1984, it is estimated that over 1,000 injection drug users in Edinburgh were infected with HIV. The social and demographic characteristics of 300 HIV positive drug users attending a medical clinical between 1987 and 1991 have been recorded. Nearly all were unemplayed, poorly educated and living in council-owned accommodation; one third were female, 17% of whom were caring for a child. Half the cohort lived with a partner, and one @j?h with parents; there were no dtflerences between symptomatic and asymptomatic patients. During the study, 45 patients died, mostly from AIDS or an AIDSrelated condition. HIV positive drug users are not socially isolated, but they are heavily dependent on family support in the community. Introduction Edinburgh has one of the highest rates of HIV infection amongst the adult population and probably the highest amongst drug users in the United Kingdom. It is now estimated that between 1,000 and 1,500 injection drug users were infected in the city of Edinburgh between the summers of 1983 and 1984 (Robertson et al., 1986). Over 400 of them now attend a single clinic, which provides both HIV counselling and testing and also medical care (Brettle, 1990). These features of the clinical service offered to HIV positive drug users in Edinburgh have greatly facilitated access to a group who have the reputation of being difficult to engage for clinical purposes and particularly for research (HMSO, 1991). Accordingly, we are in a position to summarize the personal and social circumstances of a large group of HIV positive drug users, some eight years into the epidemic of HIV infection that has occurred here. The present report will document, in particular, where they live, with whom, and whether there is a discernible impact of worsening HIV disease upon the support of their friends, partners and parents. Methods
The present study was approved by the appropriate local Ethics Committee. Between September, 1987 and December, 1991, 300 HIV positive subjects who had acquired their
Address for correspondence: Guy M. Goodwin, MRC Brain Metabolism Unit, Royal Edinburgh Hospital, Morningside Park, Edinburgh EHlO 5HF, UK.
Downloaded by [University North Carolina - Chapel Hill] at 11:34 25 November 2014
422
A. CHISWICK E T A .
infection through intravenous drug use, were voluntarily recruited to the study. They were consecutive attenders at the out-patient clinic, or patients in the wards of the Infectious Diseases Unit of the City Hospital, Edinburgh. Only four patients have consistently declined to participate in the study. Median time between first ever clinic attendance and recruitment into the study was 15.2 months (inter-quartile range=2.7 months-27.2 months). Thirty patients (10%) were seen at first attendance. Data were collected relating to age, marital status, current partner, years in education and nature of living accommodation. Data were obtained by means of a semi-structured interview, coded and analysed using SSPS V4.0 for the Apple Macintosh. Centres for Disease Control (CDC) (1986) staging information for each patient was obtained from the medical notes. Differences between asymptomatic and symptomatic patients and the effect of gender on living circumstances were examined using chi-square. Results
Two hundred and two men and 98 women (ratio male:female=2:1) were interviewed. The mean age (s.d.) of the cohort was 29.1 (5.6) years. Marital and living circumstances
One hundred and eighty-three (61%) of patients were single, 49 (16%) were married, and 7 (2%) were widowed. Sixty-one (20%) were either divorced or separated from their partners. Of those not in prison, only 51 (19%) lived alone. One hundred and forty-six (54%) lived with either a spouse or a partner and 50 (19%) lived at home with parents. Twenty-three lived with one or more children. Most of these, as might be expected, were women (16.5% of female patients). It was much more common for male patients to live at home with parents that it was for females (~*(3)=25.22, pt0.001). Figure 1 shows the differential proportions; there were no differences in the proportion of men and women living alone, or with a partner. Percentage of subjects 0
10
20
30
40
50
60
70
80
90 100
1 With children With parents With partner
Alone
FIG. 1. Percentage (vertical bar gives 9S% confidence internal) of the non-imprisoned HIV-positive subjects divided by who they live with (U, females; H, males).
THE EDINBURGH COHORT 423
Downloaded by [University North Carolina - Chapel Hill] at 11:34 25 November 2014
Accommodation One hundred and sixty-five (55%) of the group lived in council accommodation. The Standing Conference on Drug Abuse (SCODA) report (Haw & Liddell, 1988) identified an X-shaped distribution of problem drug takers in the city. Our group is concentrated in the four corners of the X. There are, respectively 39, 36,30 and 23 people living in each arm of the cross, which comprises 43% of the total. These concentrations correspond to the location of four large housing estates generally regarded as foci of poverty and deprivation. Twenty-one (7%) were owner-occupiers, 22 (7%) lived in bed-sits or rented rooms, and 18 (6%) in supported accommodation. Twenty-eight (10%) were in prison at the time they were seen, and one person was in a drug rehabilitation centre. There were no significant differences between asymptomatic and symptomatic patients as far as their living circumstances were concerned; the figures for asymptomatic and symptomatic groups respectively were council housing 55% and 55%, single room 28% and 29%, owner occupation 7% and 6% and prison 10% and 10%.
Education and occupation As a group, the subjects were poorly educated. Ninety-three per cent had had less than 11 years of formal education. Truanting from secondary school was commonly reported. Information is not available on numbers of children who play truant from the secondary schools which serve the large estates from which our cohort was drawn (Lothian Regional Education Department, personal communication), so we do not know whether our subjects were typical of their peers in this respect. However, four had a degree, 21 (7%) had completed a City & Guilds Diploma, 14 (5%) had completed an apprenticeship. At the time of interview, all but five were unemployed. Those in employment were, respectively, carpet-fitters (2), motor mechanics (2), and a road manager with a rock group.
Deaths During the course of the study, there were 45 deaths from the following causes: AIDS (23), AIDS-related conditions ( 11), suicide (2), accidental overdose ( 6 ) , complications following an injection into the femoral artery (2), head injury (1). Eighteen died in the City Hospital, five in a hospice for people with AIDS or HIV infection, two in the Royal Infirmary of Edinburgh, and the remainder at home. Discussion We have been able to take advantage of a unique opportunity to study a large group of drug users with HIV infection. They were necessarily selected for their willingness to attend a clinic offering health care and some maintenance prescribing of methadone. This study provides some insight into their domestic circumstances. They are almost all unemployed, poorly educated, and reside predominantly in council-owned accommodation. About one third are women. Socially, they are quite stable. Most have a partner and 19% live with parents. Cross-sectional comparison suggests that progression to symptomatic disease has not led to greater social isolation. The findings emphasise the dependency of the patients upon the financial or welfare provisions of the state. Thus, almost all of them were unemployed and about half live in
424
A. CHISWICK ETAL..
Downloaded by [University North Carolina - Chapel Hill] at 11:34 25 November 2014
council accommodation. They are not, however, bereft of social supports, and most of them live with either a partner or, significantly, with parents. A cross-sectional comparison of symptomatic and asymptomatic patients does not suggest that a discernible increase in social isolation has occurred yet, in relation to disease progression. From this point of view, the findings are moderately reassuring but they will require careful up-dating. It is evident from the anecdotal accounts of deprivation in the United States that care is frequently either never available, or is withdrawn from heavily dependent individuals with HIV. The question of who will care for these patients as they become increasingly unwell, will continue to be asked. The answer will continue to be of medical, moral and political significance.
Acknowledgements We thank the doctors and patients of the Infectious Diseases Unit, City Hospital for their co-operation, Norma Brearley for the careful preparation of the manuscript, and the Medical Research Council for project grant support.
References BREI-I-LE, R.P. (1990) Hospital health care for HIV infection with particular reference to injecting drug users, AIDS Care, 2, pp. 171-181. CENTERS FOR DISEASECONTROL(1986) Classification system for human T-lymphocyte virus type III/lymphadenopathy-associated virus infection, Annals of Internal Medicine, 105, pp. 234-237. HAW,S. & LIDDELL,D. (1988) Drug problems in Edinburgh dism’ct, Report of the SCODA Field work study (Standing Committee on Drug Abuse). HMSO (1991) Drug misuse and dependence. Report of a medical working group (HMSO, London). J.F. & BREITLE, ROBERTSON, J.R., BUCKNALL, A.B.V., WELSBY,P.D., ROBERTS,J.J.K., INGLIS, J.M., PEUTHERBR, R.P. (1986) Epidemic of AIDS related virus (HTLV-IIVLAV) infection among intravenous drug abusers, British Medical Journal, 292, pp. 527-529.
